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Questions for
Dari Taylor from CRY families
The
debate
How
pleased was she with the response from fellow MP's for her bill?
Thrilled!
76 Labour MPs wrote to me to say they supported the bill, a total of 97 gave
their support, and several others said they supported the issue but believed
that new legislation was not the answer.
The
response in the debate was equally positive, and I was very pleased by the fact
that MPs from all sides spoke broadly in favour.
Why
did Dr Vincent Cable, who was one of the sponsors for the bill ask so many
questions that Dari was unable to answer? e.g what percentage of lives could be
saved by screening?” This had already been raised during the reading of the
bill, when it had been ascertained that approximately 80% of lives could be
saved. He also asked, "what percentage would want to know that they had a
life-threatening condition?" I believe that it had previously been
stated that, "Alison Cox maintained that only one person/family had stated that
they had not wanted to know." I felt that these were deliberately,
irrelevant and damaging questions, as percentages could only be given per ratio
of the population who had already been screened under a national survey.
I
certainly don’t agree that Dr Cable was being deliberately irrelevant and
damaging. As you said, he is one of 11 sponsors of the bill, and before he asked
his questions he said “part of the purpose of the debate is to exercise
critical scrutiny. We are all in favour of the Bill, but there are questions
that need to be asked.”
Some
of the questions that Dr Cable asked would require more research to answer. One,
for example, asked what
percentage of the people who are affected by the conditions are being picked up
under the present system. Half of the problem, of course, is that we are not
really sure what percentage are picked up: how many are misdiagnosed, missed
completely, or never explained?
Other
questions were very difficult when seen as questions, but seen as suggestions
they were very constructive – such as the question of whether there was any
attempt to collate the information to create a national database. Unfortunately
I only had 4½ minutes to sum up at the end of the debate, so I was unable to
answer all his points.
The
minister’s reply
Did
she think the minister addressed the issues in the bill?
First
and foremost, the minister’s response was given by the medical establishment:
they advise her, and they wrote her speech.
The
interesting part of her speech is the last page or so, which was focused on the
issue at hand and established the new body
When the minister summarised the bill did
she deliberately digress from the issues raised in an effort to' talk the bill
out' due to the time-factor.
No.
She agreed over two months ago that she would not talk out the bill.
Negotiations had reached the point that I was of the belief that she was to
offer to establish an expert to write a new chapter. If she had not, I would not
have withdrawn the bill.
Can
she explain why the minister’s decisions were made before the debate was
heard, and does this not rather defeat the process of democracy?
For
a Private Member’s Bill from any part of the House to achieve support, there
are always negotiations that take place in private.
I
was originally asked to withdraw the bill on the basis of what was very good
offer. I said no: I wanted the offer to be made on the floor of the House and
recorded, and for other Members of Parliament to air their concerns and views.
Democracy
is about expressing challenging ideas that persuade people to support a
different policy or adopt a different stance. Democracy worked well in this
Private Member’s Bill.
Prior
to the reading of the Bill, and before entering the Strangers Gallery, Amanda
was asked how she thought the Bill would be accepted. Her reply
was, "We generally have an idea of the outcome". Did Dari
also have some inkling of what the outcome would be before presenting the Bill?
What was her reaction when she was asked to withdraw the Bill?
Absolutely.
I knew I had the medical establishment questioning much of what I was saying,
and many were resistant to change. I worked hard to gain political support, not
just from Labour MPs but Liberal Democrats and Tories as well.
The new committee and the NSF
chapter
Was
she happy with the outcome of a new committee?
The
new committee has the potential to deliver all that we asked for – so I
am broadly happy, but very aware that we are not yet home and dry. The terms of
reference include all that we asked for, as well as some other subjects; we will
have to make sure the other subjects do not swamp our own. The membership of the
group will include experts from CRY, as well as representatives from other
groups; we will have to ensure that the CRY voice is heard, and the families who
have brought this group into existence receive the credit they deserve. The tool
of an NSF chapter has all the power we need to implement our goals; but we must
make sure that the chapter is comprehensive.
Why does
it take a year for this new body to be set up to discuss screening?
The
time-frame of a year is for the committee to finish, rather than start. The
expert group should be established very soon, but translating CRY research into
detailed guidelines is a technical, demanding job. The government has very
strict evidence-based criteria before it dictates medical advice, as is only
right. Incorrect medical advice can be devastating, so I believe that it is
worth taking the time to get it right.
By
uniting with other Heart Organisations will CRY's work which deals solely with
young people, under the age of 35, be absorbed into other charities; the
majority of whom are concerned with the middle aged and the elderly?
I feel that many of our successes under CRY's Campaign which we have worked so
hard to achieve will be lost or accredited to others.
This
is a CRY triumph, and I believe everyone recognises that. I am fully focused on
the under-35s, and together we will keep the pressure up to make sure that none
of our achievements is lost.
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